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Neurodiverse Mumsnetters

Use this forum to discuss neurodiverse parenting.

Reading this board is like looking in a mirror, and I don't know what to do.

36 replies

BoardLikeAMirror · 13/02/2022 11:19

Hello

I've been lurking on this board since it began, and I see more and more posts that seem to be describing me, and I'm not sure whether to be glad as it might provide an 'answer' or unhappy because I don't think there's any way I will be able to get support.

The latest one was this morning - the thread about posture - I realised I do exactly that, I am sitting 'wedged in' with my clicky joints and only three days ago, my DH commented that the way I sit in the car (as a passenger - I am too uncoordinated to drive myself) is 'weird' - basically I brace myself into an upright position by pressing my hands down on either side of the seat.

That's just one example, I could go on and on. I am very socially awkward, poor at recognising people, I talk to myself, make noises and skin-pick when I am on my own.

I often struggle to get dressed in the morning because I don't like the sensation of changing the clothes against my skin. WFH has made this worse as I used to have to force myself to do this but now I'll put it off unless I have a camera meeting and I'm going for days sometimes without getting dressed.

There were also lots of things when I was a child, but I was born in the 70s when there was far less awareness of ND so I am not surprised that nothing was picked up.

I think I would feel better if I could be diagnosed because it would absolve me of the guilt I often feel for the way I am and the shame I feel at the millions of embarrassments in my past, but there's no hope of it because it takes me days to work up the courage to phone the GP for so much as a repeat prescription. I can't face the conversation because I'll feel as though I'm being disbelieved - my tone of voice always sounds 'false' when I talk about my health.

I'm not even sure why I am posting but I feel better for expressing this, so thank you to anyone who takes the time to read it.

OP posts:
RainbowZebraWarrior · 14/02/2022 20:45

Oh and also, the waiting list is so long for Adult Autism assessment that I believe GP's have been extra funding to outsource to private companies. My GP told me that she could get me an assessment within months rather than years.

ofwarren · 14/02/2022 20:47

@soitwas You've got nothing to lose, but everything to gain. The relief of knowing that actually, you aren't just a failed human being is immense.
Have you done the AQ and the RDOS test?

rdos.net/eng/Aspie-quiz.php

psychology-tools.com/test/autism-spectrum-quotient

Clarice99 · 14/02/2022 20:57

@SoItWas

Same op. I clearly have a lot of autistic and adhd traits, but not sure if I actually have either, and not sure if there's any point looking into it now.
No point now? Is there a particular reason why not now?

@BoardLikeAMirror

Well done for contacting your GP. The feeble response:

but not very encouraging about the likelihood of a successful referral - apparently they often get pushback and are told just to treat any anxiety symptoms.

As per the NICE guidelines, GP's are to make the referral for an assessment. The guidelines do not mention autism services pushing back, so if this happens, you can refer to the NICE guidelines and raise the matter with PALS if necessary.

The problem is the waiting lists are usually very long with the wait times being approximately 2 years (or more). However, don't let that put you off. Getting a proper assessment and a diagnosis is worth it for so many people.

RainbowZebraWarrior · 14/02/2022 21:05

[quote ofwarren]@soitwas You've got nothing to lose, but everything to gain. The relief of knowing that actually, you aren't just a failed human being is immense.
Have you done the AQ and the RDOS test?

rdos.net/eng/Aspie-quiz.php

psychology-tools.com/test/autism-spectrum-quotient[/quote]
@ofwarren is right. I have a friend who has a child who is very likely Autistic. She absolutely will not persue a diagnosis as she doesn't want her child 'labelled' The child has diagnosed Asthma. The Mum doesn't get the fact that Neurodiverse conditions are just as important to be diagnosed. I have Asthma too. I also get repeated tonsillitis. I have no problem with being seen by specialists for that. People should not shy away from persuing Neurodiverse conditions.

BoardLikeAMirror · 15/02/2022 07:26

Thank you @Clarice99 - that's useful information. I've found the NICE guidelines and they seem very clear:

'If a person scores 6 or above on the AQ-10, or autism is suspected based on clinical judgement (taking into account any past history provided by an informant), offer a comprehensive assessment for autism.' www.nice.org.uk/guidance/cg142/chapter/Key-priorities-for-implementation

If I have to wait, so be it, at least I will have the knowledge I am doing something!

OP posts:
BoardLikeAMirror · 17/02/2022 12:47

Good news - I have spoken with the GP doctor again and I'm being referred! She asked me a lot more questions about my childhood and so on - also about some of my present behaviours. My husband was in the room and afterwards said 'I didn't know you did that!' (with reference to some 'rituals' I have) which brought home to me how much of myself I keep hidden even in the privacy of my own home.

The doctor warned me it may take a long time but didn't say any more about it being pushed back so hopefully I will hear something even if it's just confirmation I am on a waiting list.

OP posts:
BlackeyedSusan · 17/02/2022 12:53

great. well done. it is absoulutely exhausting and rakes up a lot of things and emotions from the past but absolutely bloody worth it.

ShiftingSands21 · 17/02/2022 12:55

That’s great @BoardLikeAMirror well done on taking this significant step.

ofwarren · 17/02/2022 13:06

Great news! The only way is up now Flowers

Namechangeagain84 · 17/02/2022 13:11

That's good news! Could you throw some courage my way please?!
I hope this significantly helps you Smile

BoardLikeAMirror · 17/02/2022 17:02

Thank you for your kind wishes Flowers.

@Namechangeagain84 I hope you soon feel able to take a step. It is frightening, laying yourself bare to a doctor. It was probably good that I had to do it over the phone (my GP surgery still doesn't seem to be doing face to face appointments) because I could basically just shut my eyes and pretend I was talking to myself.

Having the AQ test to talk about was a huge help so I would really recommend filling one in and referring to it when the time comes.

OP posts:
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